Dedicated to raising awareness of ALL tick borne diseases, offering support, and providing referrals for information, research, and healthcare choices.

Arkansas Lyme page on Facebook was contacted by a reporter with the Arkansas Democrat Gazette looking for sources: people who believe they contracted Lyme Disease in Arkansas, even though the State Health Dept. says they don’t have Lyme. This is very important. Now is the time to share your story of “Arkansas denial” with a media source. Please follow up with this reporter!

His contact information is…………..cfranco@arkansasonline.com. Please pass it along to anyone who would be a good source.

This is a non-profit race dedicated to create awareness about Lyme disease and raise funds for the International Lyme and Associated Diseases Education Foundation (ILADS.org), a non-profit organization educating and training leaders about the disease.

This is a race dedicated to Alisa Garland Hipp and all the Lymies of Northwest Arkansas and beyond. All proceeds will go towards ILADS (International Lyme and Associated Diseases Society) who help train leaders to treat for Lyme and other tick-borne diseases.

If you are interested in sponsoring the event, contact araceagainstlyme@gmail.com.

For more information about the race, please visit:
http://www.araceagainstlyme.com/

 

Join the Mayday Project this year.  Promote hope for all who suffer from Lyme disease.

Re-posted with permission of the Mayday group.

mayday project big announcement

As promised here is the big announcement we’ve been waiting to release: We will be meeting with the IDSA President in March to discuss current guidelines.

We have presented them with evidence found in peer-reviewed articles written by the original IDSA Lyme guidelines authors containing evidence that a persistent/chronic infection exists. We are fighting with science and we’ve made some headway, we believe this could help have the restrictive IDSA guidelines reviewed.

We have adjusted the schedule to focus our energy on the IDSA. We have their attention and we need to keep it that way. The dates are still the same, the hotel is still the same, but the candlelight vigil is now occurring at the IDSA instead of at Capitol Hill.

Now we need you to show up to help us let him know just how many of us there are that are suffering! If you can’t make it, please send someone in your place. Join us as this will truly be a monumental year!

Washington, DC – WEBWIRE – Monday, November 03, 2014

The Mayday Project welcomes the fact that Dr. Paul Auwaeter, a key author of the 2006 IDSA Guidelines for Lyme disease, responded in detail to our concerns about the guidelines in a Medscape article about Mayday’s outreach to IDSA members at the IDWeek medical conference in October 2014.

Dr. Auwaeter’s statement that there can be “productive collaboration among advocacy groups” was especially encouraging.

Mayday also appreciates the open-mindedness of the doctors and researchers who spoke with us at IDWeek, and those who read our open letter to IDSA members. We gained valuable insight into the complications of battling emerging diseases, such as Lyme, and a better understanding about the dangers related to overuse of antibiotics.

However, we take issue with Auwaeter’s statement that “the recommendations in IDSA’s guidelines are safe, effective…”

Read the article in it’s entirety  here:   Webwire Article

I made it back from the Philadelphia protest in one piece. It was a great experience, as usual, meeting many new faces from across the country. NY, CT, VA, WV, WA, OR, FL, KS, NV to name a few, were all participants. We had a candlelight vigil for those who have died from Lyme the past year or so.

The IDSA was NOT accommodating toward us (not surprised). Just to make it clear, The Mayday Project is not protesting for long-term antibiotics.

What we want is for them to revise the guidelines and accept persistent Lyme disease as a diagnoses. This will open the door for people to do research into the chronic form of the disease and hopefully produce a cure. This is what we ultimately want, not the use of long term antibiotics. While that might help some, that’s not our demand. It’s a complete revision of the Lyme disease guidelines to accept and acknowledge chronic Lyme. Their only response to us has been “long term antibiotics are dangerous” and references to an outdated John Hopkins University study that showed “Chronic Lyme disease” doesn’t exist. Same old thing they have been spouting for years.

I will add a link to the video of the protest so you can see what it is all about.
In the meantime, back to local issues. Let’s talk about the Arklatex.

Since there are many of you who feel that physically protesting is not the way to gain acceptance of Lyme in our area, let’s go for another strategy. Then maybe the protests can come later.

First, lets’s figure out a plan.

DEFINE THE PROBLEM IN THE ARKLATEX.

A). GOALS:
TO GAIN ACCEPTANCE AND RECOGNITION THAT LYME IS IN THE AREA?.
WHAT ELSE?
WHAT ELSE?.
B). OBJECTIVES: HOW WE WILL REACH THESE GOALS?
WHAT DO YOU FEEL IS THE BEST WAY TO REACH OUR GOAL/
OBSERVATIONS, INPUT?

This will be a start. Like I said last week, think about this. I need input and suggestions. Let’s lay it out how we can deal with the Arklatex first. But we need to stick with the “treatment plan”. Help us fill in the blanks! We are in this together, we want change, but it won’t happen until we get in action.

I’ll plan for a conference call in about 10 days or so. Then we’ll discuss our strategy. Thank you all for your interest and posts this last month!!!!!

Link to video of the Mayday Protest in Philly, Oct. 11.
Lyme Disease Protest – Philadelphia, PA – 10/11/14

Lyme Disease Protest – Philadelphia, PA – 10/11/14
On October 11, 2014 a protest was held to encourage the IDSA (Infectious Diseases Society of America) to change their outdated and ineffective guidelines for…
Lyme Protest

I’ll be posting to the Arkansas Lyme Facebook Page as well. Arkansas Lyme Disease
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Arkansas Lyme Disease
Arkansas Lyme Disease seeks to connect those who have contracted Lyme and tick-borne diseases and…

diein

Lyme Literate Doctor vs untrained PCPs

To the PCP (the untrained doctor), your symptoms will boggle their medical intelligence. Blood tests will be of no help to them and may even lead them in the wrong direction. And as the bacteria further spreads throughout your body and your symptoms become sporadic in nature, instead of admitting that they are baffled and treading outside the boundaries of their general practice knowledge, they will turn it around on you with disbelieving tones and body language. At your insistence, they will follow outdated guidelines and declare you “CURED” after just 21-days of antibiotics. They will miss the early window, taking your first visit as Stage 1 and all their efforts will fall in vain to the wayside. You may leave the office more confused than ever, frustrated, or possibly relieved ~ however, your journey is just beginning.

Now the Lyme Literate Doctor has all of the same basic medical school training ~ however, what makes them stand apart, is the ongoing continuing education that they submit themselves too, conferences that they attend on a regular basis, lyme networks and resources that they are connected to. They have experienced first hand that some patients just do not respond to the 21-day round of antibiotics. They understand the complex intricacies that surround this disease in all stages and offer alternative treatment options. They will do blood work but it is not necessary in order for them to diagnose you. They understand what all your symptoms mean, individually and collectively, they know by your response whether treatment is working or if you need to change protocols. They will believe you from day one and they will never mock you or talk to you in condescending tones. They will never ever call you crazy because they understand that once the bacteria cross the brain barrier, that you are prone to all kinds of neurological symptoms and cognitive failures.

Once they diagnose you as having Lyme, they may pursue blood work through a Lyme Laboratory to uncover if any co-infections exist. Mention the word co-infection to your PCP and watch for their reaction. Co-infections can complicate a lyme patients treatment with strange and unusual symptoms. When a Lyme Literate doctor is dealing with a Lyme patient, they know to expect this. Your untrained PCP will become even more baffled and change your diagnosis a dozen times over. They will send you to every specialist under the sun ~ who, if they are not Lyme Literate, will send a note back to your PCP stating that they found NOTHING wrong with you. After countless visits, thousands of dollars spent on medications that didn’t work, tests that revealed nothing and energy spent chasing your tail, your doctor will proclaim that you need to see a therapist, that you are depressed and possibly mentally ill.

Your Lyme Literate doctor will explain things every step of the way, what to expect from the illness and from the treatment that you are taking. When you call or see your Lyme Literate with a symptom concern, they won’t be surprised. They may suggest backing off on your dosage to calm the herxing effect that you are having. They will recommend things that foster healing on all levels. Because they understand this disease inside and out. A Lyme Literate doctor is not GOD, they won’t be able to give you a time line but they will be able to read your level of healing based on your symptoms and they will be supportive every step of this journey.

So if you or a loved one thinks that they may have Chronic Lyme or have been told that they have Chronic Lyme ~ your next decision is a crucial one. It will make all the difference in the world between how long you remain sick and how soon you get better.

I encourage you to reach out to your State Lyme Disease Websites and Support Groups and if you don’t have that information, you can find it athttp://whatislyme.com/websites-and-support-groups-by-state/

©paulajacksonjones2014

Lyme Warrior 24/7/365                                                                         10609578_4398468097128_1182593789471148614_n